100 Days

It has now been 100 days since my last chemo infusion on October 1, 2024. That seems like a good excuse for an update. 

I've alluded to this in previous entries, but I'm astounded at how long recovery from chemo takes. Over three months from my last infusion and I'm still weak, feeble, and my balance is terrible. I've only just recently stopped using my cane around the house for stability, but I still get around like an old man and make frequent use of countertops and door jams to maintain stability.

I just turned 62 but I feel much more like 72+ these days. Seriously.

My hair is taking an incredibly long time to grow back. I think I mentioned this in the previous post but my glacially slow hair regrowth has turned into a gauge for my healing in general. I've been very frustrated that I'm not getting better any faster than this, and my wife reminds me that my hair regrowth is a visual indicator of how long it's taking my body to recover from the chemo. That has helped me be more patient, at least to an extent. 

Matters of fact: At 100 days after my last infusion, I have 1/4" to 1/2" hairs growing on most of my head, eyebrows, mustache, cheeks, arms, and chest. (I was no gorilla before I got sick but I was a kind of hairy guy, making the loss of hair very apparent.) At a distance, I still look mostly hairless. Only my chin hair seems to be growing enough to be obvious.

Somewhere in the middle of my chemotherapy, at the end of some of those rounds, I felt well enough to go for short hikes now and then. I expected that to happen during the last week of round five and six, but the accumulation of Docetaxel in my system had built up enough that I never saw "better" days during those rounds. Little did I expect, though, that I had so much in me it would take many more months to recover once chemo was over. It will be interesting (in a somewhat perverse way) to find how long it will actually take before I feel like my old self again. At times I wonder if I will ever feel like my old self again.

In better news, I started physical therapy, and I've been working on some things that definitely seem to be making a difference in terms of strength and balance. In addition, just in the past week or so, I've started to do a few upper body exercises on the Total Gym that I bought about a year ago. (At the time I bought it, I thought I was really run down and out of shape, and it was winter. I didn't realize cancer was spreading through my body and making me feel that way.)

My physical therapy exercises are focused on hip and balance issues right now. All lower body work. My upper body was always the stronger half of me but I still want to get back some of what I lost through last year's ordeal. That's the Total Gym's job right now. I'm also happy to report that, even though I'm only doing about a dozen repetitions of a handful of exercises, it's not wiping me out. The smallest amount of exercise was wiping me out from February 2024 onward. It's nice to feel that I'm finally at least well enough to handle some minor exercises. It's been a while!

One last thing. I'm still on my anti-testosterone hormone drugs. I will likely remain on those drugs. I really have to wonder how big a role those are playing in my overall lack of strength and stamina. They've got to be playing some role!

Hairy Christmas!

Some time in December, my hair started growing back. I'm still mostly bald but you can definitely see dark hair coming in on my head and a lot of gray stubble on my chin. 

To my amazement, this didn't start until over two months after my last infusion! The first stuff we noticed was very wispy, white or light gray hair on the side of my head above my ears. Then the gray stubble started on my chin. I have heard various things from people about post-chemo hair growth, some saying it will grow in curly and others saying it will grow in gray. I hadn't noticed if anything came in curly, but I was starting to wonder if I had lost my dark brown hair. 

Thankfully, it looks like I haven't. My chin (which was already salt-and-pepper before I got sick) isn't showing any signs of dark hair, but what's coming in on my head is more dark than gray. My beard is not growing very fast on the sides of my face, making me wonder if it's going to come back in dark but, somehow, the dark hair is taking longer?

Anyway, I'm happy to see my hair coming back. It's still probably going to be another month or so before I have enough that I'll need to trim it, but time will tell. 

On a related note, I've been rather impatient with my inability to (physically) do much now that I'm done (for now) with chemo. My wife pointed out that my incredibly slow hair growth is a good indicator of how long it's taking the rest my body to heal. It's been helpful for me to see things from that perspective.

 

A New Kind of Therapy

So many therapies. 

When I first had the prostate cryoablation in April, everyone in the medical profession seemed to be calling it "cryotherapy" (probably because it sounds less invasive.) Next came "chemotherapy", which was a gentle way of saying, "We're going to poison you, repeatedly, for months, in order to try to poison the cancer in the process." I'm also undergoing some "hormone therapy" by means of the testosterone inhibitors and blockers that I'll probably be taking for the rest of my life. 

Now I'm on to a different kind of therapy.

On Wednesday, I had my first physical therapy appointment. Originally, they weren't going to be able to get me in until some time in January, but they called on Monday and asked if I could start on Wednesday. I was keen to start as soon as possible, but rather apprehensive about it, too.

Between my lack of physical activity this year and the abuse my body has taken from both the cancer and it's treatment, I am currently in the worst shape in my life. For example, when I need to lift up a leg to put a shoe on or get into a car, I have been using my hand/arm to reach down and help lift it. For whatever reason(s) my lower body has fallen much more out of shape than my upper body, which was confirmed at this first PT appointment. 

Part of the appointment was diagnostic. They had my medical records, so we talked about the weaknesses I'm experiencing and what some of my goals were for PT. I came up with such lofty goals as "be able to stay balanced again" and "be able to hike a mile in the woods again." My therapist then ran some tests of balance, resistance, stamina, etc. The simple resistance tests made it clear that, while I did still have some upper body strength, my lower body was pretty wimpy right now. 

I suppose that's not too surprising, considering that the had cancer spread to my lower spine and both hips before we discovered it. I remember looking at my PET PSMA scan from back in March and being blown away by how much cancer "lit up" in my hips in particular.

Anyway, I feel like I'm in good hands with this physical therapist. He seems to know his stuff. He gave me a set of exercises (stretches, really) for me to work on at home and went through each of them with me in the PT room. By the time I got home from the appointment, I was pretty wiped out by everything we had done, so that was the only set of exercises I did that day. 

I have managed to go through at least one set of each of the exercises on each of the days since. My therapist wants me to do two sets, though, one in the morning and one later in the day. So far I haven't managed it, partially due to how I feel and partially just due to stuff we've got on the calendar. I'm determined to get into it, though. It's the only way I'm ever getting back to hiking, biking, and kayaking.

With that, then, I'm off to do my PT exercises for today!

Reasons To Be Cheerful, Parts 13-20

In order to try to counteract the woe-is-me vibe of the last couple posts, I felt like another "Reasons To Be Cheerful" entry was in order. This is Thanksgiving week, after all. If I needed a good reminder to be thinking more about gratitude than personal anxieties, this is surely it.

13 - I should probably begin by saying that I'm very grateful to be alive. That might sound intentionally dramatic but, when we first got the "Stage 4: incurable, metastatic prostate cancer" diagnosis back in March, we were so scared that we weren't sure if I'd make it to the end of the year. I'm very grateful to still be here.

My wife's love and caring for me during this process initially prompted me to write a journal entry called, 'My Hero', back in April. Then, when I stumbled on the idea for posts like this, she was actually my #1 Reason To Be Cheerful back in June. However, It didn't feel right to now say something like, "I already mentioned my wife, so let's move on." There is literally no way I could be doing any of this without her. She has done so much for me during this battle, from making sure I eat well to helping manage my appointments and medications to holding me tight when the going got really rough and/or I got really down. She has showed me so much love and encouragement every single day that I am eternally grateful to have her by my side during all this. 

My daughter has been great through all this, too, although she no longer lives at home. It has been scary for her to see her dad so sick but she continues to be strong, loving, and supportive. I'm so proud of the young woman she has become.

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Similarly, I'm still grateful for all my previous "Reasons To Be Cheerful", but I won't repeat those here. Instead, I'll list some new(ish) gratitudes...

14 - I will be forever grateful to the friends who have visited me, sent heartfelt cards, gifts, messages of encouragement Facebook or Messenger, and generally supplied me with pats on the back as I went through chemotherapy. I don't think I can ever repay what that has meant to me.

15 - I'm SO thankful that the chemo is over, at least for now.

16 - I'm relieved that all the treatments I've received have been successful. 

17 - My doctors feel that I won't need any more poking and prodding until the end of January. ... Is that the same as #16?

18 - I'm grateful for the times when I have the energy to get outside and be in nature. The relative rarity of those times makes me appreciate them even more.

19 - All of the enforced "down time" I've experienced this year has reminded me of the value of slowing down and doing nothing at times. Just being quiet and alone with the thoughts in my head. That's got to be a form of meditation. I didn't realize I had lost the ability to do that until the chemo forced me to recognize it again.

20 - All of my enforced "down time" has allowed me to reconnect with music in ways that I haven't been able to for a while. My listening habits had become somewhat cursory and much less intentional in recent years. Lots of listening on the go but very little listening with the intent to fully absorb. Having little else that I could do this year has refocused and improved my relationship with music.

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The title for this particular series of posts was inspired by the delightful song from Ian Dury & The Blockheads called, "Reasons To Be Cheerful, Part 3". It came out when I was in high school around 1980 and was supposedly written in the aftermath of a near-death accident where a lighting roadie of the band's was electrocuted. It's actually a happy song, though, because even when Ian Dury went dark he still wrote fun songs.

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 For reference:  Reasons To Be Cheerful, Parts 11 & 12

Chemo Flashbacks and Dread

It's been almost a month since my last journal entry, and almost two months since my last chemo infusion. It would be nice to say that I'm feeling so much better now but I can't. I'm still very weak and have almost no stamina. I still need my cane for stabilization because my balance is atrocious. My issues right now could be due to the lingering effects of chemo, the testosterone inhibitors that I'm still on, or the fact that I've had almost no significant exercise since February (10 months ago). 

What's most likely is that the fault lies in some combination of the three.

In addition to still being very weak and tired, I seem to be having all sorts of nerve misfires these days. I've been calling them "chemo flashbacks" since the chemo really messed with my nerves and caused numerous problems throughout my body. Many of them are less severe now, but I still can't get used to them. Sometimes...

• I'll get some neuropathy (uncomfortable tingling) in my hands. 
• It will feel like someone is using my heel or big toe as a pincushion. 
• One of my eyelids will just start flickering like crazy. 
• It will feel like someone is jabbing me with something sharp.
  

The list goes on, unfortunately. The chemo brought these things on before and they often lasted for torturous lengths of time. Now, they are much shorter in duration but seem to happen much more frequently.

Then there are the hot flashes. I wasn't really sure if these were caused by the chemo or the lack of testosterone under my other meds. There are some days when they're few and far between but other days (like today) where I've probably had a dozen hot flashes through the day. Although I know my body is still trying to clear out the chemo drugs, I'm leaning more and more toward blaming the hormone meds for the hot flashes. It's a disappointing conclusion because I'll probably have to be on the hormone drugs for the rest of my life. (This cancer feeds on testosterone.)

Honestly, though, I feel like the main reason I haven't written in a while is depression from dwelling over the word that has been repeated over and over by my team of medical professionals... "incurable". I'd like to think, after everything I've been through since February, that I'd be "cured". Such is not the case and, even though doctors have been telling me that since the start, the reality of it still brings me down. It didn't help that I recently read about a guy who had the same cancer, a similar level of metastasis, battled it until he thought he had it beat, then it came back even worse a year later. 

People often talk about the physical issues associated with this battle, but not always about the mental and emotional ones. I'm not even sure I'm ready to talk about it here. I am, however, grateful to have a very open and communicative relationship with my wife and daughter, as well as friends who check in and send me messages of encouragement and love. Both have helped me navigate through this post-chemo darkness in my head. It's still there but at least I'm starting to feel like I'm starting to see some light.

The weirdest aspect of the depression is how it took me by surprise. I thought for sure that I had been through the worst (mentally and physically) and that the clouds were going to lift and I'd start feeling (mentally and physically) much better. Instead, I've gone into what my mom used to call "a funk" over the idea that I still have cancer and that it will still try to kill me. 

Not might... will.

How does anybody handle that kind of weight? I'm in the process of trying to figure that out. One thing I do know is that dying suddenly without any type of warning is definitely the way to go out. There's a heck of a lot of dread involved in knowing you've got a problem that is going to eventually kill you.

Graduation Day

Originally, I was scheduled to have six chemotherapy infusions. If I was to have more than that, today would have been the day I got the seventh. Thankfully, that did not happen. 

We simply met with the oncologist today, to have a brief discussion about where we go from here. He feels that my PSA level (now 0.26, which is great because it was once over 100!) is a good indication that my treatments were effective. He does not feel the need to continue chemo at this time (YAY!) but won't rule out ever having to go through it again (BOO). 

Each of the various doctors that I've seen during this nightmare have reminded me that my cancer is not just "simple" prostate cancer. Especially since it spread to my hips, spine, and a few other places, they have all stated (more than I really wanted to hear) that my cancer is terminal and that they cannot completely cure me of it. So, while I'm very happy to stop chemotherapy, at least for a while, I'm still having a very hard time knowing that this disease will come back to try to kill me again.

If you define "chemotherapy" as only the drugs given to me by infusion, I'm now done, at least for the time being. However, I will remain on some other types of chemotherapy. I will remain on Aberaterone, a hormone blocker, that I take orally every morning. Prescribed with that is a low dose of Prednisone which helps tamp down my body's reactions to Aberaterone. I'll also continue to get Prolia injections once a month. This is to help strengthen my bones, particularly where the cancer has attacked them. Finally, I will continue to get an Eligard injection every three months. Eligard is designed to keep my body from making more testosterone. I will also continue to take numerous vitamin supplements to counteract the negative side-effects of all these drugs.

The emphasis on lowering and blocking testosterone is because that's the "food" that this type of cancer likes. I suspect that the incredibly low energy that I'm still feeling to this day has as much to do with all that testosterone blocking as it does the Docetaxel infusions I've been getting for the past six months. This worries me because only the Docetaxel is being paused. I don't feel like I have much energy, certainly not enough to do much exercise, yet exercise is what I need most right now. (See my previous journal entry for one of many reasons why I feel that way.)

Don't get me wrong. I'm happy to be done with the infusions, at least for now. Docetaxel was like some sort of poison that, at its worst, truly made me feel like I was dying in several different ways. Even its lingering effects, some of which are still at play in my body, seriously degrade my quality of life. I just feel like it would be nice to have this nightmare end. Instead, I've just leveled up enough to be on more of a maintenance program than a full scale attack. 

I still have cancer, then, just much less of it. No one has yet to give me any kind of prognosis for survival other than to say "years". When I try to press for something more specific, no one is willing to give me an answer. The idea that a resurgence of this aggressive form of cancer could come back to get me in just a couple or few years haunts me, and I'm pretty sure it will continue to haunt me. I don't know how to make peace with it. I guess I'm just going to have to get even better at living in the moment because it appears that my moments are numbered.

"I've fallen and I can't get up!"

A scary thing happened to me the other day. My wife and I took a drive to look for some fall color here and ended up at a somewhat local forest preserve. We decided that we were both up to a short hike around the basic loop trail there, which was only about a half a mile in total. 

We were most of the way around the loop trail with our car in the parking lot in sight, and I spotted some cool fungus growing on an old log. As I tend to do in such situations, I got down on one knee to compose the shot. When I tried to get up, though, I couldn't do it!  My legs were literally too weak to help get me off the ground. I had my walking stick nearby, so I tried to use that to help me get up. Nope. 

I was starting to struggle (and maybe panic a little) so my wife came over to where I was. (She had stayed on the trail while I went off trail for the photo.) She put a hand out to try to help me get up. We tried several times and I still couldn't get up! My legs felt like wet noodles; like they had no muscle whatsoever and were useless limbs. I was really panicking now. Was I ever going to be able to get off the ground?

There was a decent size log about 6' behind me, so I scooted over to it and was eventually able to position myself to sit on it. My wife kept asking how she could help get me up but I said I just wanted to sit there and catch my breath. I was huffing and puffing, and probably at least partially because I was freaking out. Once I did catch my breath, I was in a better position for her to help so, with her on one side of me and a walking stick in the other, I was finally able to stand up. 

The story doesn't end there, though! Once I stood up, I could barely walk! Again, it was like my legs were wet noodles, likely exacerbated by the strain I had put on them to get up. It took almost as long for me to hobble the short distance from there to the car as it did for us to walk the first 80% of the loop trail. I've never felt anything like that in my legs before! I've also never felt the kind of panic I was feeling when I couldn't get off the ground, even with assistance from my wife.

I most definitely need to get some exercise, and I hope that's all I need to do to avoid situations like this in the future.